Friday, July 26, 2013

As World War II raged on, the number of admissions to institutions continued to increase. The amount of workers in the institutions continued to decrease however, as more men were being drafted every day for the war effort. Overcrowding quickly became the norm once again, with patients in hallways and even sharing beds. Without privacy, without comfort, without possessions, without support, patients were completely dehumanized and ready targets for abuse. Conscientious objectors, those citizens who refused to fight in the war for ethical reasons, were readily employed by the institutions to help fill the ranks. It is these people that began to expose the horrors of mass violence and neglect.

Those with disabilities were viewed as sick within a system that was
highly medicalized; each institution was run by physicians and staffed by nurses. In the US, "state hospitals" housed the mentally ill while "state schools" held
those with intellectual disabilities. Areas within both were referred
to in terms of "wards" or nursing units. "Patients" had "charts" and attended "therapy" or "programs". People were referred to by their disabilities, thereby fostering more dependance on the medical establishment. As feeble-mindedness was "incurable", patients under this system would require complete care as it was due to their "sickness" that people were institutionalized. At the same time, many cities in the US continued to uphold "Ugly Laws", passed earlier in the century which made being disabled a crime. This piece from the Chicago Municipal Code, sec. 36034 includes the following ordinance (that was not repealed until 1974):

"No person who is diseased, maimed, mutilated or in any way deformed so as to be an unsightly or disgusting object or improper person to be allowed in or on the public ways or other public places in this city, or shall therein or thereon expose himself to public view, under a penalty of not less than one dollar nor more than fifty dollars for each offense."

"We were greatly heartened by the appearance. It resembled a college campus."
Image courtesy of the Disability History Museum

After the war, doctors continued to urge parents to place their children in institutions. During this time, having a child or family member with a disability was seen as a burden. This story from The Rotarian
in 1945 clearly displays the thinking of the day where "A Father"
outlines the reason for institutionalizing his daughter for a
"hopeless brain condition", diagnosed after a stay at a children's centre:

"After two weeks of observation and a brain X ray, the doctors decided that Mary Lou had a hopeless brain condition and recommended that for our own good and the welfare of the two children we place her in an institution."

The "brain x-ray" in this case is probably referring to a common diagnostic technique of the time, Pneumoencephalography, whereby small holes were bored in the skull, the protective cerebral spinal fluid drained from around the brain and replaced with gas, usually room air, oxygen or helium. An x-ray was then taken. The procedure was quite painful, caused headaches, nausea, vomiting and delerium that could last months until the body naturally replaced the cerebral spinal fluid. At worst, it could cause brain damage, paralysis and death.

"A Father" felt, if Mary-Lou was kept
at home, it would disrupt family life and result in public ridicule and
shame;

"If we did [keep her at home], we should have to curtail normal family activities, to make the environment as simple as possible, for, as is typical in such cases, Mary Lou became frantic over the bustle of the simplest household tasks. We knew, too, that we would have to devote the major part of our time to her, leaving her little brother to develop as best he could. We felt that he already had been neglected.

Also, having witnessed the ridicule and ill treatment which residents of our home town turned on the "village half-wit" and his family, we understood what keeping her with us would mean to our family..."

Her admission to a state facility was described as quick and efficient; the results curative. The story concludes with "And so tragedy came into a family that barely knew the word. We think, we pray, we have faced it wisely".

Between 1946 and 1967, the number of people with disabilities that were housed in public institutions in America increased from almost 117 000 to over 193 000, a population increase that was almost double that of the general post-war "baby boom". As time went on, those admitted were becoming younger and their disabilities more pronounced. In regards to Down syndrome in particular, there were many cases where fathers and doctors conspired to have a baby institutionalized and then told the mother that the baby had died.

Albert Deutsch, who has been described as "a crusading journalist" wrote The Shame of the States in 1948, a compilation of his serial articles (previously published in major newspapers) which exposed the conditions of Letchworth Village in New York. At the time, Letchworth was considered to be one of the better institutions in the US, as it had taken great pains in its creation to ensure that the overcrowding and abuses that had occurred in other places would not be repeated there.

Opening in 1911, Letchworth Village was one of the first completely encapsulated "state schools". It included its own farm, power plant and hospital. In the words of the first superintendent, Charles S. Little;

..."buildings should not be more than two stories high, nor should they contain more than seventy inmates; that the basements should not be used for purposes other than storage; that the dormitories should be at least two hundred feet apart, with sufficient space for each to have its own playgrounds; that there should be such separation of groups that inmates of one grade could not come in contact with those of another grade; and that in locating the buildings advantage should be taken of the natural beauty of the place."

Photo of Letchworth Village, looking like a college campus.

Patients were divided into separate categories or "grades" and were kept apart: "moron", "imbecile" and "idiot", the last deemed "untrainable" and therefore initially excluded from admittance to Letchworth as they were unable, in his eyes, "to benefit the state". As further described by Little:

"...it is a home where the feeble-minded and epileptic of all ages may be given the pleasures and comforts of the ordinary home. To this end our day rooms will be provided with games, colored pictures, flowers, music, etc. Each dormitory will have its own playgrounds where base-ball, football, basket-ball, croquet, etc., may be played by the children. Swings, hammocks, and picnic grounds will be provided for in a grove. Holidays will be celebrated in an appropriate and American fashion. A birthday party will be given each month for those having birthdays that month, making a gala evening for all. Inmates and employes will join in a weekly dance. There will be Sunday services appropriate to the condition and belief of the various inmates."

Residents tended to fields and flocks of livestock, built roads, shoveled coal and made toys at Christmastime. It may sound idyllic, but by 1921, of the 506 people listed at Letchworth, 317 were between the ages of 5 and 17, while 11 were under the age of 5. Their labour force consisted mainly of children and visitors and staff would report shortages of food and that the patients looked ill and malnourished.

As time went on the population at Letchworth continued to grow. Despite this, the state refused to construct any additional buildings and by the end of 1921, 1200 patients were housed there. By the 1950's, that number had swollen to over 4,000. Families were abandoning their relatives there to be forgotten. Deutsch called it "euthanasia through neglect...".

Photographer Irving Haberman did a photo series on Letchworth which further exposed the conditions of the dirty, malnourished, neglected unkempt patients. Residents are seen huddling naked in the day rooms. Similar exposés were done on many other institutions; Time magazine would feature Byberry Hospital, also known as the Philadelphia State Hospital, in 1946 which exhibited appalling imagery of overcrowding, abuse and severe neglect.

The Nuremburg Code was created in 1947 and gave worldwide guidelines for human trials and experimentation. However, many children in the state schools were still the subjects of experiments, including early testing for
vaccinations. Many doctors at the time argued that these rules applied only to Nazi atrocities, not American medicine. The first polio vaccine was in fact tested at Letchworth
in 1950, after much lobbying by the then superintendent, Dr. Jervis.
By that time, Letchworth was considered to be highly regarded in the
medical community, despite it's shady reputation in the greater
community. The Fernald Center in Massachusetts (superintended by eugenisistWalter E. Fernald) was the site of a joint experiment between MIT, Harvard University, The Atomic Energy commission and the Quaker Oats Company that exposed male patients to radioactive isotopes between 1946-1953. Parents were given the following notice:

Dear Parent:
In the previous years we have done some examination in connection
with the nutritional department of the Massachusetts Institute of
Technology, with the purposes of helping to improve the nutrition of
our children and to help them in general more efficiently than
before.
For the checking up of the children, we occasionally need to take
some blood samples which are then analyzed. The blood samples are
taken after one test meal which consists of a special breakfast meal
containing a certain amount of calcium. We have asked for volunteers
to give a sample of blood once a month for three months, and your son
has agreed to volunteer because the boys who belong to the Science
Club have many additional privileges. They get one quart of milk
daily during that time, and are taken to a baseball game, to the
beach and to some outside dinners and they enjoy it greatly.
I hope that you have no objection that your son is voluntarily
participating in this study. The first study will start Monday, June
8th, and if you have not expressed any objections we will assume that
your son may participate.
Sincerely yours,
Clemens E. Benda, M.D.
[Fernald] Clinical Director

What was not mentioned to the parents was that the calcium given to their children in the milk was radioactive.

From the mid 1950's to the early 1970's, researchers at the Willowbrook State School in New York, carried out experiments on children that were deliberately infected with Hepatitis A and then treated with gamma globulin. In the early years of the study, patients were fed infected fecal matter. Later they would be injected with more pure versions of the virus. Those that investigated the abuses surmised that the children would probably have gotten Hepatitis at Willowbrook anyway due to frequent outbreaks, so that it was probably "for the best" that they got it under such scientific circumstances. At one point the school was closed to new admissions, except for the Hepatitis program. This led to parents agreeing to allow their children to be the subjects of experiments, just to be able to admit their child to Willowbrook. Either way, both parents and children were given very little choice whether or not to participate in the program.

Between 1917 and 1967, those that died at Letchworth, Willowbrook and other facilities like them, were buried anonymously. Steel or stone numbers were their only monument, possibly due to cost or at the families wishes of privacy. Regardless, even in death, these people were denied their basic humanity, up to and including their own name.

In 1948 in Great Britain, the National Health Service (NHS) was introduced and institutions were now nationalized and transformed into actual hospitals (yet run like schools). Emphasis then shifted to admitting only the most disabled and those with behavioural issues. Also that year, the National Assistance Act (which replaced the "Poor Laws" of Elizabeth I) made it a duty of local authorities to arrange assistance for those who were deaf, blind, dumb, handicapped by illness, injury, congenital deformity or suffering from a mental disorder (which included developmental delays). This included increasing access to specialized education.

In 1950, anothersurge of advocacy took place in the United States. Parents had begun to organize and had created the National Association of Parents and Friends of Retarded Children (which would later become The ARC). By 1952 many US states had created legislation for educating children with intellectual disabilities (although those that were classified "moderate" to "severe" were excluded). As the 20th century would progress, the horrors of the institutions were becoming more commonly known, yet still persisted. Sterilization, lobotomization, tortuous experimental "treatments" and physical abuse were still the norm and the numbers of children being admitted continued to climb. Instead of "feeble-minded" "moron" "imbecile" and "idiot" the terminology of choice was now changed to retarded, a blanket term that included any and all learning disabilities and developmental delays. ("Mongolism" would still be used to describe Down syndrome until 1965). With the ease of one word, society was now able to dismiss an entire segment of the disability community, while callously watching their plight on the evening news.

By the 1960's even the architecture of the institutional buildings had evolved to reflect the culture of medicine, of the hospital. Staff had separate showers, lounges and toilets. The floors were easy to wash tile, bathrooms were stall-less and completely devoid of privacy for ease of both cleaning and supervising residents en masse. Furniture was sparse, hard and unwelcoming. Medical professionals wore clinical white uniforms and jackets, their names and position clearly displayed on name tags. It was a stark contrast to the patients who wore communal clothing of various states of (dis)repair. It was very clear who was in control.

Niels Erk Bank-Mikkelsen, the director of the Danish national services for Mental Retardation visited an institution in California in the 1960's. His report included the following "I couldn't believe
my eyes. It was worse than any institution I have seen in visits to a dozen
foreign countries. . . . In our country, we would not be allowed to treat cattle
like that."

President John F. Kennedy Jr. formed The President's Panel on Mental Retardation in 1962. The panel was comprised mainly of medical professionals and focused on both treatment and prevention. "Retardation" itself was seen as something to "combat".

Senator Robert Kennedy toured Willowbrook in 1965, (accompanied by a TV crew) and compared it to a "snake pit". It's population of 6000 children was 2000 over capacity. He described the children as "living in filth and dirt, their clothing in
rags, in rooms less comfortable and cheerful than the cages in which we
put animals in a zoo". Later he would address a joint session of the New York legislation regarding the "dehumanizing" conditions at both the Willowbrook and Rome State Schools. During his speech, he declared that the residents of the institutions were denied both access to appropriate education and their overall civil liberties. The following year, Willowbrook was featured again as one of the institutions in "Christmas in Purgatory" when Dr. Burton Blatt and photographer Fred Kaplan used hidden cameras to capture images of the atrocities in several institutions. According to Dr. Blatt "there is a hell on earth and in America there is a special inferno". Senator Kennedy received a great deal of backlash from his comments, most insinuating that non-medical personnel would be unable to classify or understand what they were witnessing in "whirlwind tours". Dr. Blatt reacted to them thusly:

"It does not require a scientific background or a great deal of observation to determine that one has entered the "land of the living dead." It does not require too imaginative a mind or too sensitive a proboscis to realize that one has stumbled into a dung hill, regardless of how it is camouflaged..."

"Christmas in Purgatory" also gives insight into the treatment of infants and very young children in such places. Warehoused in extremely overcrowded, spartan surroundings and devoid of stimulation including human touch, it is easy to see how the people there never stood a chance.

"The infant dormitories depressed us the most. Here, cribs were placed-as in the other dormitories-side by side and head to head. Very young children, one and two years of age, were lying in cribs, without interaction with any adult, without playthings, without any apparent stimulation. In one dormitory, that had over 100 infants and was connected to 9 other dormitories that totaled 1,000 infants, we experienced a heartbreaking encounter. As we entered, we heard a muffled sound emanating from the "blind'' side of a doorway. A young child seemed to be calling, "Come. Come play with me. Touch me."

"In other day rooms, we saw groups of 20 and 30 very young children lying, rocking, sleeping, sitting- alone. Each of these rooms were without toys or adult human contact, although each had desperate looking adult attendants "standing by."

"In some of the children's dormitories we observed "nursery programs." What surprised us most was their scarcity and the primitiveness of those in operation. Therefore, we were not unprepared to see several children with severe head lacerations. We were told these were "head bangers." Head banging is another condition that some people think is inevitable when confronted with young severely mentally retarded children. We challenge this. We have reason to believe that head banging can be drastically reduced in an environment where children have other things to do. The "Special Education" we observed in the dormitories for young children was certainly not education. But, it was special. It was among the most especially frightening and depressing encounters with human beings we have ever experienced..."

This news special produced by NBC in 1968 still clearly shows subhuman living conditions in The Pennhurst State Home in Pennsylvania.

"Suffer the Little Children" by Bill Baldini

Although these reports and many like it would spark legislation that would begin the closing of the institutions, many were open and still functioning like this until the early 1980's. Despite frequent exposés in the Staten Island Advance and other area papers, the allegations of abuse at Willowbrook continued to surface. In 1972, Geraldo Rivera, then working as an ABC News reporter, went to Willowbrook to film "Willowbrook: The Last Disgrace". His story, which won a Peabody Award, showcased the overcrowded, unsanitary conditions and the physical abuse of the patients by the staff.

Even with all the publicity, even with all the images, stories and coverage, the institutions, according to one doctor at Willowbrook, had only worsened since Kennedy's visit.

The classification of "retarded" and related terms would continue to affect public perception and access to care for people with intellectual disabilities well into the 21st century. In the UK, a pamphlet published by The National Society for Mentally Handicapped Children in 1973 (eight years after the term mongolism had been changed to "Down's Syndrome"), had this to say:

"when informed by their doctor that their child is affected with mongolism and warned that it may show some mental backwardness, parents often imagine the worst and think that their child will never walk or talk. Although a few mongol children are as handicapped as this and they can live at home when young, they will probably later need permanent hospital care..."

"... Due to their slow intellectual growth most mongols are precluded from making satisfactory progress in formal education of the type provided by Local education authorities. However they benefit from the less formal type of education which they receive at the special centres provided by the local Department of Health although these are not always yet available in the more sparsely populated areas of Britain.

In addition to the two already mentioned there is a third considerably smaller group of children with mongolism who are even less backward and devlop intellectually from a half to two thirds the rate of an average child. Many of this group can profit from formal education, particularly when given in the smaller classes with specially trained teachers in schools for the educationally subnormal"

Doctors continued to refuse lifesaving procedures (such as heart surgery) to those with Down syndrome up until 1984; in fact there were many physicians that still classified feeding a child with an intellectual disability to be a lifesaving procedure. Until the institutions were finally closed, hundreds of thousands of people with disabilities had been discarded by their families, segregated, abused sexually, physically and mentally, not to mention violated by sterilization and experimentation. All with society's blessing as it was considered "the right thing to do".

We may never know the full extent of the abuse, nor of how many people with disabilities were disposed of out of hand, like so much garbage. It would take almost to the end of the last century for the final institution to be closed. It would take even longer for the general public to begin to understand terms such as "dignity" "rights" and "civil liberties" in relation to those with intellectual disabilities. The term "retarded" is just now being replaced in the medical literature; it will no doubt take many more to remove it from Western vernacular.

We in society have a responsibility to ensure that these victims are not forgotten. We also have a mandate to ensure that such atrocities never happen to another human being ever again.

Anonymous graves at Letchfield Village. Photo courtesy of the New York Times.

Wednesday, July 17, 2013

I've been checking out a lot of my old posts as I update our home on Tumblr. Through this, I have been able to enjoy the first days of twin-dom all over again. It all comes back so easily, those first days, so full of joy and apprehension and utter exhaustion. There is so much rawness in those early posts. So much realness. I can still smell and feel the hush of the NICU, its low lighting balm against my red-rimmed eyes.

There is anticipatory grieving there, under a blanket of rugged positivity. There is a lot of crying in the shower, there are a lot of unknowns. There were two fragile little lives there, with skin like wet tissue that would tear and bleed if you touched it the wrong way. There were two babies that had to learn to eat, gain weight and not get an infection. There were two little NG tubes, two little incubators making sure they had the correct amount of oxygen, the correct amount of humidity, the correct amount of light. One baby was smaller, whose birth weight of 4 lbs 1 oz plummeted dramatically, whose bilirubin was scarily high at one point, who had an IV long after her twin. The other baby, the older one, was bigger, more "healthy" looking at first... however his ECG, his oxygenation, his little blue feet would give him away. He has an extra chromosome and an AVSD, the width and breadth of which we would not know for sometime after his birth.

Those fragile babies have now grown into robust toddlers. The littlest has grown into the strongest, trying daily to prove that she is indeed Batman, even though her parents insist she not dive off the top of the couch. She will climb anything and lift herself into a bridge between two pieces of furniture by just using her ankle. Her twin is mastering standing on feet that seem too small for his size; feet that are no longer blue as they take their first halting steps towards cruising. His heart has been mended, the memory of that time fades with the scar on his chest. There were so many unknowns there in those first days, so much fear presumably stemming from their prematurity and related health concerns. I am heartened to see in those early posts a glimmer of the future, of the place I am now. It would have been easy, I suppose, to blame Wyatt's extra chromosome for all of that, for the time that took me away from my family, for the inconvenience, for the drain on our financial, mental and spiritual resources. There are some who did, there will be some that inevitably will. In reading those old posts, it became clear to me that I never did that. "Extra chromosome" is two words out of the paragraph above, two words that bear no more significance that the ones that surround them. Those babies, fragile as newborn chicks have grown into some pretty kick-ass kids. Along the way I stopped being a "mommy blogger" and became something else. There is evolution here. There is a revolution here.

As I've said before the rhetoric of Ableism runs deep. The undercurrent of such shapes how we view those that have physical and cognitive differences from the rest of us. This is where the heart of my regret resides, as the part I am most guilty of and have to forgive myself for, lives here. I participated not just as a member of the human race, but also as one in a position that really should of known better, a health care professional. Paternalism, one of the largest branches of Ableism, was embraced wholeheartedly in this house. We were going to do "what was best". Coming from a medical tradition, in those early posts, you can see that DS to me was a list of symptoms. A list of diseases and illnesses to be researched and treated.

I looked at these lists a little closer, as time went on and I realized that almost all the "symptoms" listed were things that could occur to anyone. In fact, there were more than a few things there that I have personally--and I consider myself to be a reasonably healthy person. But, according to this list, if I had an extra chromosome and the same conditions, I would be very unhealthy. Poorly, even. I had to overcome the rhetoric of "Down syndrome is not compatible with life". I did that... and wept at my presumptuous past. Now that I look back, I realize that a lot of that 'grieving' that followed the twins homecoming had nothing to do with what was happening with them medically. Rather, it had to do with the slow realization that I had disregarded, out of hand, a whole segment of the population, while maintaining the premise of advocate for others.

Thanks to the culture I was raised and educated in, I actually did believe at one point that those with "severe" developmental delays were devoid of an inner life, possessing only an absence of inner thought beyond certain rudimentary instincts. Life was described as functions. Base, bestial. That rhetoric runs deep even today as many people still believe people with intellectual disabilities are no better than animals.

In my nurse world, we used to get a lot of what we then called "severe autistics" who were brought to hospital due to aggression. They were quickly medicated, restrained, controlled. No one stopped to ask the cause of the aggressive episode that precipitated their hospital visit, rather it was just accepted as something that happened. It was "to be expected". That was autism when I started my career. Acting out, feelings of complete sensory overwhelm and overload, these don't seem foreign to me any more. Through the tireless efforts of self advocates and the extended autism community; these behaviours now have explanations and many, including myself --- through the years, as I gained experience --- have acquired further insight.

Quite frankly, I feel a little this way after a while if I don't pace myself. If I don't take vacation, if I don't stagger outings, if I don't employ my coping mechanisms, I end up feeling like I am covered in post-it-notes. I become swamped by psychic and emotional clutter that is inevitably left over from an average day at the office. Certain clothes hurt. Sounds grate, smells gag. I don't have autism. But I can relate, even if only in a miniscule way. That had to be learned. Common ground had to be found and the rhetoric of "devoid of meaningful thought" had to be overcome. But it did. I did... and was completely horrified at how I had viewed my fellow humans.

Old ways can be overcome through the tireless efforts of others, it is true. The rhetoric that we possess about others, whether ableist or cultural in origin, run so deep in our psyches that we don't even know that they are there. They are. They can also be found and carefully rooted out through education and self reflection. Perceptions can evolve. Language can change. It is very frustrating in the advocacy world as you often come across people that are so ignorant, so willfully opposed to learning or accepting a potentially new way of thinking about other people that it is very tempting to give up. It is very easy to assume that some people are beyond hope, beyond reason (and thereby become as close-minded as those that you hope to affect). I don't have the liberty of thinking that way; I was one of those seemingly hopeless, arrogant people and yet, here I am. I will forgive myself for subscribing to the ableist rhetoric for so long and continue my personal evolution as my family grows. However, I will not forget.

Changing current perceptions about Down syndrome will require a larger presence of (for lack of a better term) self-advocates. It is those with DS themselves that will finally spearhead putting the rhetoric down for good. Then, we can put to rest the notion that people with Intellectual Disabilities/Developmental Delays are unable to champion their own rights and simply refer to them as we would any other advocate. The next chapter in this civil rights struggle has yet to be written. I and those neuro-typicals like me won't be the ones writing all of it either; we will have the privilege of participating, to help things unfold and to amplify the message.

There is evolution hard at work here, even within the revolution itself...

Monday, July 8, 2013

"Ableism is so pervasive that it is difficult to identify until one begins to
interrogate the governing assumptions of well-intentioned society.
Within the space allowed by these rhetorical premises, ableism appears
natural, necessary, and ultimately moral discrimination required for the
normal functioning of civilization."

[A]bleism is that most insidious form of rhetoric that has become reified
and so widely accepted as common sense that it denies its own
rhetoricity—it "goes without saying." To fully address it we
must name its presence, for cultural assumptions accepted uncritically
adopt the mantle of "simple truth" and become extremely difficult to
rebut. As the neologism "ableism" itself testifies, we need new words to
reveal the places it resides and new language to describe how it feeds.
Without doing so, ableist ways of thinking and interpreting will
operate as the context for making sense of any acts challenging
discrimination, which undermines their impact, reduces their symbolic
potential, and can even transform them into superficial measures that
give the appearance of change yet elide a recalcitrant ableist system..."

I'm a mother and a nurse, not a scholar. I'm not going to make any pretensions about that. I'm also a half-assed gardener and occasionally, I take a pretty picture of something I've grown or of someone to whom I've given birth. As a "writer" I am one voice in the wilderness of the blogosphere. I came into this role woefully unprepared and in the process have discovered many things about Down syndrome, our world, our Western society and indeed, myself. I started this place as a "Mommy blogger" and am slowly growing into a disability advocate. I started out thinking that I could try to change a few minds and that would help create a world that was more receptive to people like Wyatt. I wanted to help build a garden where old stereotypes did not linger in people's minds. A world where the phrase "my son has Down syndrome" would not automatically generate uncomfortable looks, apologies or awkward exclamations of sentimental rubbish.

Lately, I've been preoccupied with the subject of ableism and how it impacts my son. Western culture is rife with it. It is buried, deep within the rhetoric,
deep within the language that we use to share our opinions to one another. When it comes to the subject of advancement of people with
intellectual disabilities such as Down syndrome, the tools that we advocates have
chosen to use may appear to advance our goals of inclusion and
acceptance. Sadly, those tools, in many cases, do the exact opposite. How we view disability,
how we see each other, how we as parent and friend advocates feel about
the the world-at-large all impact our efforts. I've also realized that I shouldn't be planting anything for my son, but rather preparing the soil for him to sow a garden of his own.

It was those two quotes above that finally clarified what I had suspected for some time. We are overgrown with ableist rhetoric, whether we mean to be or not, no matter how "good" our intentions. On the surface, the very words that we choose shape how others perceive us and how we see the world. The grand daddy of them all, the R word, is a perfect example of this. However, the dialogue goes deeper than that. Like rhizomes, negative concepts that shape our entire perception of disability are spread throughout our history, dating back to Aristotle. As Cherney states, ideas such as "normal is natural", "disability is evil" and the "body is able" are rampant throughout the Western world. Other rhetoric, including those that incorporate socioeconomic or religious ideals (such as "disability is uneducated", "disability is baseborn", "disability is ethnic") seem to sprout up everywhere.

These are all part of our great post-colonial tradition of "less than". Our everyday language shows that we see others with disdain. That able and functioning at optimum physical perfection is what we are all supposed to be and anything else is a failure; lesser; unworthy. Even amongst "disabilities" there is a difference. We in the Western world commonly refer to those that employ physical assistive devices such as wheelchairs and support animals as "differently abled". Those that have cognitive impairments however are "developmentally disabled".

As I've mentioned, I come from a medical background. For years, I embraced a more mechanical definition of disability, which in its most basic form states "this part isn't working as it should, therefore the patient is disabled". The person is seen as broken, malfunctioning, stunted. This quickly leads to pity disguised as empathy. Then to romanticism, as an artistic touch is now given to what is "broken". A more realistic viewpoint is the social model; this way, disability is described by a series of barriers, exclusions and negative attitudes (that includes language). An individual may have a physical, cognitive or psychological difference from their neighbours, but it is the lack of societal provision that makes it an actual disability. Humanity is diverse and flourishing; it is only when a person runs into a situation where their needs are not met, can they be defined as actually having a disability. Most can easily relate this model to well known things, such as ramps or closed-captioning. However, when it comes to DS and challenges of communication and interpretation, as a culture we cannot seem to move beyond the medical model. No one seems to want to say that it is society that has disabled these individuals, not their neurological makeup. Even within the whole of the disability community itself, those with Down syndrome and related developmental disorders are considered less than.

From the medical tradition you also get the -isms: Infantilism, where those with DS are seen as adult babies, "Baby Huey", or 'forever children'. It is probably the most insidious, as it strips all dignity and sense of self and worth from the individual. They are forever dependent, in the most basic sense. There is also Anthropomorphism, where those with Down syndrome are referred to in supernatural or angelic terms or possessing traits that are more like "powers". Quite possibly the most sneaky of them all (and one that I am guilty of as well) is Paternalism, where all decisions, beyond a point where they should be made by the person themselves, are removed and placed in the hands of those who are deemed--by the same abilist society--as being more qualified, be they parent, school, doctor or organization. This model often decides "what is best" and assumes as Cherney states, that "it goes without saying", based on old, outdated practices and ideas. For example, we are told that those with DS do not follow "typical" patterns of growth or development and that these ideals should not be applied. Yet, we still continue to apply them with the attitude of "how else will we know whether the child is behind?", instead of just allowing the child to develop at their own pace in a loving, supportive, caring environment. IQ tests are culturally biased and archaic, yet we still continue to use them to determine 'level of cognition' and therefore predetermine a person's 'functionality' and thereby, worth. Our organizations, both religious and philanthropic, readily fall into this trap too, as they betray their roots as the charities that they were originally founded as, to help "the poor unfortunates". Regardless of the origin, regardless of some degree of "good work" having been performed, regardless of intent, the result is the same: an abilist act grown of an abilist system. Each and every time it is employed, it undermines those with Down syndrome. It hampers efforts to become more visible, for those with DS to move out of the world of poverty and neglect.

Not surprisingly most of the Down syndrome advocacy movement is borne of this ableist system, myself included. We allow the rhetoric to continue by ignoring demeaning language such as the R-word, by describing our loved ones in childish terms, by giving them "angelic" or "superhuman" qualities, by romanticizing the medical definition of disability and by continuing to make all decisions for them. We, the people that are supposed to be helping, are only perpetuating stereotypes. Pictures of good looking kids with catchy sayings may sound like a good idea (and I won't deny that there was a certain purpose served by this initially), but they are not. My son's extra chromosome is not kitsch, it is not property, it is not made of love. He is not an angel and he himself is not perfection incarnate. I did not design him either, nor do I believe a supreme being handcrafted him for our family... I only had the pleasure of providing half of his genetic material.

I've run into a lot of nationalism too. Recently I read a Letterman-style "Top 10" list of reasons why one particular country was the best in whichto raise a child with complex needs. The article will no doubt be shared far and wide within the advocacy communities and it saddens me, as the article itself is so rife with inconsistencies, poorly researched half-truths and flat out falsehoods that it actually turned my stomach to read it. Blogging communities seem to be often divided among these national lines as well. There also seems to be some kind of hierarchy in the advocacy world; the more disabled your child/loved one/you are, coupled with the amount of "time served" you have in this community, the more of an "expert" you are. Assuming there is such a thing in the first place. Politics within the movement itself are rapidly threatening its very life; I don't know whether to laugh or cry when I see those calling for inclusion acting very negatively and exclusive in their practise.

But what about the world outside? Much of what gets published about Down syndrome or special needs in the mainstream these days might as well be misery peddling. Subjects that go well beyond simple anticipatory grieving seem to be de rigueur and are now perpetuating the negative stereotypes that we are fighting so hard against. Initially, I'm sure this trend was meant to be a way for parents to find fellowship in what can be some very long and seemingly isolating days. But, how much negativity can one person read surrounding a certain condition before they start applying those traits to that condition? In our sensationalist world, unless a piece about disability keeps things at status quo (ie: 'less than'), it is not publishable. Full of anger towards your child's diagnosis? Blame your child's diagnosis for your own personal issues? STOP THE PRESSES! Depression, disgust, having to "force" one's self to play with one's own child... these are are all things that go well beyond the realm of a grief reaction or situational crisis and in the end only feed our detractors and probably belongs in a therapist's office. In the end, which is worse? Our own community disparaging those that they claim to represent, or those outside that hate our kids?

Then there is the stereotypical "Down syndrome superstar", who by having a prom date or scoring a goal or participating in a major life event, allows all to feel misty, paternal feelings. Add a little more anthropomorphism, in the guise of "angels" and "my child has made me a better person" and you have the domain of inspiraporn, which is just more ableist rhetoric. The reality is that not every child will be a superstar and the effects of the extra chromosome will vary from child to child, as well as the resources and supports made available to them. I'm personally guilty of this one, not realizing that the reason I felt the way I did when Wyatt was diagnosed with his AVSD (and probable chromosomal disorder) in utero, was the ableist society in which I lived. If my culture had not continued to push the idea of the "hardship" or the "broken child", would I have been as sad as I was initially with his diagnosis? Would I have grasped blindly for for the first sign of positivity, the first glimmer of "hope" in the form of staged photo-ops and over the top inspirational motifs? Let me put it another way: if one truly accepts people with intellectual disabilities and developmental delays as equals, these stories would not be news. However, many cling to them desperately, willing to overlook the weeds of ableism and instead renaming it a wildflower of "awareness".

What this civil rights movement needs is more visibility. Not from parents or people like me, but from the self-advocates themselves. That is why I share almost everything from VATTA blog on our Facebook page. It is the people with Down syndrome who need to create the language that describes them, it will be the self-advocates that create the new rhetoric to promote neurodiversity. It is happening. Slowly, seeds are germinating.

As one of my children has Down syndrome, I've had to evaluate my perceptions of disability over and over. How will this affect Wyatt? How can we, as his parents, best guide him to adulthood and allow him the freedom to advocate on his own behalf, whatever form that may take? To reach "his full potential" on his own terms, not our abilist ones?
At what point do I stop "parenting" and become "paternalistic"? For now, I guess, my job is to continue to expose the rhetoric and ableism while nurturing the creation of a new construct, a new set of definitions that not only include neurodiversity but were created within that community. Despite how disheartening all this can be sometimes, despite how physically and emotionally exhausting it is, I will continue to prepare the soil of this revolution. My family will continue to explore the world of Intellectual Disability and Developmental Delay the only way we can, through the eyes of others, including our son. I must persist with preparing this earth for my kids as they grow. I know, one day, my son will communicate "It's ok, Mom... I've got this" and I will happily put down my bucket and drink a Mojito in the shade. Until that time however, there is much work to be done. All are welcome to offer a little sweat equity; there is a lot of weeds to clear, soil to turn and rocks to pick...

Monday, July 1, 2013

Every month I compile a list of the stories I post on Down Wit Dat's Facebook page.
They are stories of activism, of inclusion, of advocacy, of education,
of hope and awareness. Every day advocacy was a theme this month, as were reflections on motherhood.

Action Alert: Contact Governor O’Malley of Maryland
to Demand an Independent Investigation Regarding the
Death
of Ethan Saylor - See more at:
http://www.ndss.org/About-NDSS/Newsroom/Recent-News/Action-Alert-Ethan-Saylor-Update/#sthash.2UoMhRDE.dpuf

What You Have to Say About Down Wit Dat:

"Just wanted to let you know how much I admire you. I know you fight a lot of demons, both yours and for others, yet you still maintain that fantastic sense of humor, and more importantly, fairness. You are a constant source of light in the darkness, because you are beautiful inside and out..." - S. R.

"...Wonderfully written and one thing Jen does with her writing is make you stop and think ...and think hard." - J. Toner

"Before I had my little L., I never knew anyone with down syndrome, your page has given me so much hope for my little boy, the people who post pictures of their children and the things that you post are wonderful, its made it easier for me to understand and get used to, thank you, keep doing what your doing with the good work, much appreciation. X." - L. Barnes

"Your post (and the posts of others that you linked to) actually made me tear up a little. Growing up with a brother with Downs, I actually got into fist-fights because of "that word". Hearing it used as a derisive and insulting term by people who should know better (or by those who do know better but are just looking for attention in the case of Coulter) is NEVER ok. Thank you for speaking out.﻿" - I. Thomas

"I love these history posts. This is a TON of work on your part, thank you so much!" --N. Haegele

"I don't have any children yet, and I'm not sure how I ended up reading your blog. But it is absolutely inspirational. I'm so glad Wyatt was born into your family where I am sure he can live a happy fulfilled life." --artandtourism

"Above all, Jen is an amazing mother. She is honest and real, and inspires me everyday to love my "typical" child the way he needs to be loved, respect him as a person, and not even for one single second take him, or anything for granted. She allows me to venture into her life, and care about her and her family. What dear little children she has blessed the world with. She is planting seeds, nurturing and growing her family (and extended reader family) into people who will make this world a better place. Why aren't we all more like that?" —Penny

"Jen and her family have an amazing story and mission. Jen's writing reflects the difficult and triumphant steps of life with a special needs child; twins at that, and a older sibling. Thank you for sharing your families' strength with the on-line community."--S.B.

"I think I'm a little bit in love with Jen, and if she lived down the road I might just be a blogging groupie, not because I'm a crazy stalker I hasten to add, but because the easy warmth in which she tells her story convinces you that you are simply having an easy chat with your best friend. She has a subtle wit and craft to her blog posts, they are not just splurges of untamed emotion. This enables her to not only tell her story with honesty and in an enjoyable way, she also manages to impart a message without coming across as patronising or preaching. It's a rare gift for a blog about special needs."— Renata

"Having a child with special needs can be an isolating experience -- even more so when you live half a world away from your friends and family. Due to this, the internet became my primary source of support and camaraderie with other parents in similar situations. I read dozens, if not hundreds, of blogs about being the parent of a child with T21, and though most had positive points, for the most part they just didn't 'speak' to me and what I was feeling. Then came Jen and 'Down Wit Dat'. Suddenly, I heard a voice that was in harmony with the things I was feeling and going through. Her writing is so brutally honest, while at the same time insightful and informative...not to mention FUNNY! If there has been one thing I've learned on this journey, it's the importance of keeping your sense of humour -- even when you seem to be losing your sanity. Thank you so much, Jen, for putting out there the human, REAL side of our special club -- and being a voice for those of us that are so often unheard." — Dee

"I love the honesty, Jen never glosses over the difficulties and never fails to celebrate the victories. My children are not special needs but I can always find commonalities and it has opened my eyes to the fact that people with Down syndrome are not as different from the rest of us as they might initially appear. Since I've known Jen and been reading her blog my attitudes toward respect, and what it means, have changed. "The "r" word" particularly hit home as I had been ignorant to the effects of the use of that word. I do my best to help spread the message."--Susanne

"I have been following this blog for months now. I have nothing but positive thoughts and warm fizzy feelings when reading it. My only regret is not having found this blog when it was originally started. One piece that particularly sticks out to me, was the blog about the "r" word. I don't think I have actually cried so much reading a blog that wasn't about someone dying. I printed it off and shared it with many friends, because Jen is right. She struck a nerve and made me realize that not only myself, but there are many others around me that use that word without realizing how powerful it really is. Down Wit Dat is a blog full of enthusiasm, awareness, whole heartedness, truth, encouragement, laughter, but best of all, its full of Jen, FAMILY, and a look at what having a special needs child is about. Keep writing. You're amazing!" —B. Nason

"I love Jen's take on the special hand that she and her family have been dealt. I especially love that while she shares all her son's small victories she doesn't gloss over the challenges that she and her family face. The best thing I love about Jen and her blog is that she is constant supporter of the rights and challenges of kids and adults with Down Syndrome. She has provide a lot of insight that has opened my eyes and many others. I especially loved her blog about the "r" word. It opened dialogue with my family, friends and groups that I am a part; and I am much more conscientious about the words I used to describe people"--V. Saenz-Brown

"Jen's blog is wonderful! While I do not have a down child, as a mom, I relate to the everyday struggles of just doing your best, of the struggles, the heartaches, the joys of everyday life. Jen writes in a positive and uplifting style with just the right doses of humor thrown. Great read!" —Terra

"This blog is written from the parents perspective, which is important. Jen's story is not unique, but the way she tells it, with humor and honesty is wonderfully refreshing. It brings a real perspective that people can understand and relate to, and is a resource for parents of not just Down Syndrome kids but of all kids to know that life may not be perfect but that everyone has a unique way of dealing with it."—Kimberly

"I too am the mother of a down child. It gives me great giggles, sorrow, and camaraderie to read her blog daily. I find it makes life's little challenges more bearable. She is honest, upfront and a wealth of information. And I think her attitude is one many of us share and embrace. Even if she does not win, she is a huge winner already in my book. Lots of luck and love to her and her amazing family." —L.Grassa

"I love Down Wit Dat because Jen is so honest about her experience as a parent. Jen is not afraid to write about her vulnerability, anger, fear, joy, or love. She's an amazing writer! Jen's description of her blog is so bang on! I laugh and I cry, sometimes simultaneously."—Marla

"I am currently a Disability Services major in college and for my one class we had to find a blog by a parent who has a child with a disability to follow and discuss with the class every week. I have been following your blog for a couple weeks now and I get so excited to talk about little Wyatt and what an amazing family he has and the struggles and victories that you all over come daily! Someday down the road I hope to have children and if I am granted a special needs child I can only hope that I can handle everything that comes my way as positive and good as you do! You are doing an amazing job and are a great mother! Thank you so much for sharing your story!"--Anonymous

"Your blog is incredibly inspiring. I have laughed out loud, been in tears, and everything in between! it's fabulous." -HDSSG

"If you haven't been told today... you're awesome." - Trevor

"Wyatt is fortunate to have such a mom." - Anonymous

"...Thanks for your honesty and insightful points. It helps put our own thoughts into words to pass on when we encounter the same situations." - P

"I am enjoying reading your blog. I taught preschool/education for about 35 yrs and most of it was spent in CA where there is encouraged mainstreaming. I enjoyed having special needs kids...they bring a special and fun element into the classroom! I also had a young man with Downs who was my class helper at one time...he was so much fun! I wish people knew these things....as there are preconceived ideas..." - Jenny

"I remember speaking with you when you found out about the possibility of one of the babies having some abnormalities, and you did not know how you would handle it. My response was, once the situation arises you will find ways to deal with it. I must say, you have done so well with your children, especially with Wyatt. You are not ashamed to embraced what God has blessed you with, and to share your new found info with others who might be less fortunate, and to those who might be less accepting. I am sure you have empowered many people who are in the same situation and need a little love and support. You've turned negatives into positives. I must say you are an awesome mom. Keep up the good work, it not going unnoticed." - K. Garwood

"... I just started reading from the beginning... I am intrigued. It is so incredibly well written with so much love. There were parts I would start to cry. I felt your sadness and your happiness and your passion. These children are so lucky to have you as their mother. I can't wait to read the rest of it and get caught up!!! Thank you so much for sharing your life with us! ?" - M. Laine

"Just had a few minutes to read more of the blog and I must say I LOVE it! I could not agree more that so much of the info I found as a new mom was SO depressing. I didn't jump for joy with the dex of T21 but it wasn't anything I could change so we accepted -and started to read everything we could get our hands on. Can't wait to read more..." - E. Chesnut

"I wanted to say I love your blog. You write so honestly... Thank you for writing so candidly." - M. Antushevich

"Found your page completely randomly while trying to connect with other wine blogs like myself. I do not have any kids or know anyone with Down Syndrome but your blog really captivated me. I guess that is how good it is. Keep up the good work :) " - The Frugal Tasters

"There are going to be many times when i say how courageous you are! I do not think it can be said enough, you take YOUR time to educate and inform and rid parents of their fears! THANK YOU THANK YOU THANK YOU . I wish my kids were old enough to read and understand! Hopefully one day the maturity level will be there so they can and come to appreciate life more not for the big things but for the everyday moments that will mean more than the big ones EVER will! ?" - C. Cochran

"I, too have a son name Wyatt who happens to have an extra 21st! He was born 2/15/11! Thanks for sharing your story. We're in good company : ). " - R. Scheerer

"My daughter will be 8 in Nov. Unfortunately, my parents I felt were ashamed of my daughter. If only they had gotten to know her before they passed on....." - A. Welsh

"I always enjoy your straight forward, tell it like it is posts. People need this information. They need to know how their ignorant, or often well intentioned but uninformed, words and actions are frustrating, annoying and/or hurtful." - Shayna